[PTSD] So I have this thing called aphephobia/haphephobia or a 'touch phobia.'

[moonvoice]

I wrote this as a reply to someone, but decided to repurpose it (to upcycle! Lol) here (it's been a bit edited):

*

Imagine your favourite food in the whole entire world was chocolate. It wasn't just your favourite food, it made you feel better to eat it, it improved your mood, and nothing else really compared to it. It's more than just a food. It's something that you're dependent on. You love having it, sharing it with others, experiencing it. It's great.

Then - one day, for reasons that aren't entirely clear - it makes you throw up, and feel itchy and scared and aggravated all at once. It's horrible. For a year - because you love chocolate so much - you make yourself eat it sometimes thinking 'maybe it's the type of chocolate, maybe it's the brand, maybe it's the ingredients, maybe I just need to stand upside down while eating it,' every crazy thing you are thinking of. You are that desperate to get back the 'feeing better' and improvements of eating it. You try other foods. You try lateral thinking. You try crazy stuff that makes you feel more sick while eating it, and you try scientifically prescribed stuff that doesn't make a difference.

Nothing else makes you feel as good, nothing compares to it; one day you remember that humans are biologically designed to need chocolate. Tests show that without nourishing, healing chocolate, human babies are more prone to die, to get sickness, to wither, to be emotionally stunted later in life. Damn, you think, I need this stuff. Not because of science, or my biology, but it just made me feel good. I was more human with it. It was part of my shared collective experience of what it was to be a human.

Then, one day, after thousands of dollars and years of painful therapy and problems with your friends and family members who don't really understand it, you are considered 'recovered.' But your recovery is that simply - you can eat chocolate without throwing up or feeling itchy, most of the time - but you'll probably never be able to taste it again. It will never make you feel better again. Or improve your mood. And people tell you that this is reasonable and okay and even think that this is a Good Thing (TM). You can functionally eat chocolate without being sick, so...goal achieved?

They are wrong.

*

Now, substitute 'chocolate' for 'touch', and you have haphephobia (aphephobia, or touch phobia). This is what I have. And this is what I've had for almost five years now (along with PTSD).

*


Man it would be horrible to be that dependent on chocolate! But the analogy stands, human animals are dependent on postive experiences of touch. We are social animals. Without the ability to enjoy touch, I will always be a broken human animal. I will be biologically and physiologically incorrect. But even more than that - I will suffer for it every day that this is the case, as I have suffered for it every day that I've had it. Not a day goes by that I am not heartbroken at my own condition. Don't get me wrong, I think I am an extremely fortunate person in many respects. I enjoy many parts of my life. But not as much, and not in the same way. I have learnt to find the joy where I can find it; who wouldn't? That's what you do when you want to make the most out of life, but I'm not going to ignore the impact this condition has on me; even though I frequently try.

PTSD without a touch phobia - even when my symptoms were phenomenally worse - was 'easier' to deal with (I say that with a considerable amount of wryness, I mean it's still PTSD), it was easier to cope with my life, it was easier to be resilient to all of life's problems. I was a nicer person. I was less grumpy. I found it easier to forgive. It is amazing how the ability to touch someone's shoulder, or embrace them, or kiss them on the forehead in a crisis makes you a nicer human being overall. Or at least, it certainly made me a nicer human being.

*

After five years of concerted, applied, fatigue-inducing, dedicated therapy with different therapists and even one specialist, and self-work, I can confidently say I have improved. And by improved I mean I can sometimes hug some of my friends and not feel awful or gross or like I need to run from the room about it. Sometimes I can hug my closest friend and not shudder with disgust or feel nauseous or sick. About four times a year I can do that.

Sometimes however, the touch phobia is so severe that even putting on my own moisturiser in the morning, can trigger a strong, phobic fear reaction. A couple of years ago a GP prescribed eight sessions of massage for a muscular condition; I went to one session and the massage therapist flatly told me they couldn't help me. The muscular condition never healed as a result. I just don't relax unless I'm unconscious! That's a shame, I used to love massage too. And I get a lot of muscular conditions as I work as an artist, but also have crippling nightmares four or five times a night that leave me tense and sore every morning.

Touch often feels like 'sandpaper rubbing vigorously beneath my skin.' It's worse the better I know someone which makes me a delightful dating partner, close friend, family member and on and on. And yes, it's probably tied into my experiences of childhood sexual assault; though exactly how, none of us are sure. Not even after years of meditation, thought, self-reflection, therapy, dreamwork, clinical detached examination and etcetera. It's additionally confusing because I haven't always had a touch phobia, and I haven't always been repulsed by touch. As per the above analogy, I used to have a very positive relationship to chocolate touch. I craved it. I felt positive touch to be a joyous thing at times, soothing at others, a way of forging connections, showing compassion, and so on.

But no longer.

*

I am sure there are people out there who have recovered faster than me, because I will frankly admit that I like to take things slow in self-work and self-improvement, even if I devote time to it every single day. And I'm sure there are people out there who haven't. It's hard to know, because it's a less common phobia, and it tends to affect those of us who have already been silenced by abuse of some kind.

It seems we're the ones least likely to write about it publically, like I'm doing right now.

*

Most phobias are of things we're not physiologically designed, behaviourally programmed to need and crave. I mean, humans aren't really meant to experience positive growth upon encountering venomous spiders, needles, the number thirteen, germs and so forth. It's just, on the flipside, not meant to create super dysfunction when one encounters them.

Touch is one of the exceptions to the rule. We are physiologically designed and behaviourally programmed to need it, to thrive upon it, to grow with it. It improves our immune systems, it makes us happier people, it reminds us we are part of a community, it's a way of showing love amongst friends and lovers, and a way of forging a connection between business colleagues, and a way of being human.

*

All I can do is keep working on it. Sometimes consciously, sometimes laterally by approaching other issues in therapy, sometimes by standing on my head and focusing on the basics like eating well, keeping fit and making sure I get enough rest. Sometimes I'm in a better place about it than other times. December is always a tough time because my friends like to hug, and because once upon a time so did I.

*

I'm putting my own personal account of aphephobia/haphephobia out into the ether. I'm Ravenari, and I have a touch phobia. I'm working on it, I will always be working on it while I have the strength and the fortitude to keep doing so.

I can't tell you exactly why I'm writing about this so candidly, except that I am very frustrated that there's very few public personal accounts of aphephobia/haphephobia out there. There's some clinical descriptions, there's a few shorter personal accounts (boy I bet you were wishing this was shorter!), and that's about it. So here's some of my story. Do with it what you will.

Comments

[spider_fox]

Thank you for writing this. It's allowed me to understand this condition's actual effects a bit better, which is something clinical descriptions tend to not do very well.

I hope you are one of the people that can decrease their touch phobia *offers hugs*

[moonvoice]

Thank you for writing this. It's allowed me to understand this condition's actual effects a bit better, which is something clinical descriptions tend to not do very well.


I think the problem is, 'scared of touch' can mean so many things. And it comes in different severities. I don't I've even got a severe case, because sometimes I can go into a crowded shopping centre (online shopping literally changed my life), sit next to someone in a car (though not always, most of my fights happen because I'm close proximity in a car, and I can't easily 'get away'), stand in line near someone, sometimes I can even hug people.

It's just...when I can't do it, because I've crossed my threshold or whatever, I can't do it for weeks or months at a time. Which isn't convenient or functional at all. I'm - for example - funnelling away almost all of my energy into the Christmas period because of shopping / needing to stand in lines / having to interact with people and hug family members I rarely see and so on. January/February are always big crash months as a result. Sometimes it just extends for a really long time. I think last year I didn't see my closest friends from six months to almost a year. :(

[amethystfirefly]

thank you for sharing this. I hope that you can heal enough that this isn't such a huge problem.

[valkyriur]

Thank you for sharing something so personal.

[ariestess]

I don't think your chocolate analogy is necessarily all that bad, actually.

Thank you for sharing this, and I hope that you will be able to overcome some of that phobia.

[urbanimal]

This has really helped me understand. Thank you.

[enigmaticmagpie]

Thank you very much for sharing something so personal. While I know I will never understand what it really means to live with touch phobia, I now have a better idea what it means.

[moonvoice]

I think sometimes even I don't understand; there's no really good books that I've found (I hope I'm wrong!!!), there's no blogs about it, and so on. I don't know where I'm at in the spectrum, how to deal with it sometimes (because standard desensitisation techniques don't seem to be working, that or we need to slow it down even more; like 'over a period of years' more).

I've found one self-proclaimed specialist in WA who turned out to have major boundary issues (i.e. wanted us to have cocktails in our first session), and hours of research, calling around, talking to specialists in different disciplines have yielded precisely no one in Western Australia (so far) who's been able to help me beyond general - but very effective - expressive therapies.

I've had the most success so far with expressive therapies (particularly sandplay, though I can't always do sandplay therapy because - ironically - the tactile sensation of the sand in a vulnerable environment); but it's not like... touch phobia focused or anything.

[white_rabbit]

That analogy was wonderful (particularly because.. really, who doesn't love chocolate?). Thank you for sharing this.

I think society as a whole really tosses around the word 'phobia', in that it's just become another word for something you fear rather than something that is, in the majority of cases, something that is far more difficult to deal with. It's not just something you can get over by 'facing your fear'.

I've known a few people who have claimed to have touch phobia but are often giving hugs, cuddling with people, being close, and then sometimes completely shut off; is it something that comes and goes for some people do you know? For most people it seems like it is pretty consistent.

*offers love* I hope all your hard work pays off someday, because you definitely deserve it.

[moonvoice]

Well, mine's not the same severity all the time.

On a good day, I can hug certain people, for example (though I wouldn't be able to sit say, shoulders touching, or play sports with them, or hug them twice in a row and so on).

The thing is, on a bad day, I can't leave the house and go anywhere crowded or see people I know for fear of being touched or having to stand near them. It's debilitating. Not as bad as what some people get, but bad enough that it impacts my ability to live, work, be 'functional.' If someone walks close to me on my left hand side, no a middling to bad day, I literally become filled with rage and loathing that is uncontrollable until I move away from them or they move to my right.

Massage from anyone is completely out, because it's prolonged touch. I've managed one, from a friend, in the past five years - and I'm not sure if it helped, because of the way I hold myself when people touch me.

I also have this invisible threshold, and if I cross it because I'm having a good day, I get like this... I don't know, like a 'four steps backwards' kind of response? So I might think 'I can hug a few friends today, and maybe go to the shops for some stuff and stand in a line in close proximity to other people,' and then for days / weeks / months after that I hate all proximity and all of it makes me scared and aggravated. Which is - I think - why I can see a bunch of people over two weeks and then literally am horrified at the idea of doing it for months afterwards; and very fatigued too.

/ramble.

[white_rabbit]

Aww, thank you for rambling. I don't mind, because it helps me learn and understand, at least a little. :)

[linstar]

*sends you love*

Thank you for sharing of yourself hon - both physically when you are able to and emotionally in these posts.

Loved seeing you last night, can't wait til we get to see you again.

*huge hugs* - whenever you want them / can take them.

[gone_fishing]

Thank you for sharing this.

[cherrydaiquiri]

Thank you for sharing. I think that personal accounts of things like this are important, as they help people to understand the condition and react to it appropriately. Information is key. Also, you're a good writer, so it makes it easy to relate to what you're saying and to try to understand what these situations would be like.

Again, thank you, and I hope that you can heal.

[nachtrabe]

Thank you for writing this. It helps clarify a great deal.

Thoughts

[ysabetwordsmith]

You described that impressively; thank you for sharing. I've known a number of people with various touch issues, but luckily nothing that bad.

*ponder* I wonder if something in your biochemistry or nervous system got bent out of shape by some of what happened -- or even by the process of working through some of the other stuff, that knocked something else out of alignment. The effect is too tactile for most explanations to really fit. Certain energy problems will cause that "sandpaper' effect, but that's an energy trigger and not a skin-contact trigger.

The more I learn about you, the more impressed I get that you ... just ... keep ... going.

Re: Thoughts

[moonvoice]

I wonder if something in your biochemistry or nervous system got bent out of shape by some of what happened -- or even by the process of working through some of the other stuff, that knocked something else out of alignment. The effect is too tactile for most explanations to really fit. Certain energy problems will cause that "sandpaper' effect, but that's an energy trigger and not a skin-contact trigger.

This is something I've thought of too (and my therapist), because I also get the same reaction when people do energy work on me without my permission (or - indeed - with it). It's certainly more than just 'touch' that bothers me. Even just feeling like a person's energy is brushing up against mine - on a bad day - can have me wanting to hide in a very remote region.

It's certainly complex, and therefore - I guess - interesting! But I can't wait for it to be 'remember when I had that complex problem that's not a problem anymore?' one day. :)

Re: Thoughts

[ysabetwordsmith]

>>I also get the same reaction when people do energy work on me without my permission (or - indeed - with it).<<

Aha! That was the datapoint I needed to confirm something. You're describing a layered effect with linked but separate causes. There is both an energy aspect and some kind of physical aspect. So no single solution will solve the whole "touch allergy" problem -- and you have to find solutions for the aspects that are compatible with each other. Some psychoactive drugs, for instance, will mess up people's energy and some types of energy work can destabilize certain mental issues. Plus, a bifocal problem like that is harder to control because either layer of it can trigger the other, and the effects are more often squared than doubled. On the bright side, if you can get one aspect secured firmly, that makes it easier to work on the remaining part of the problem.

The most obvious way to address the energy issue is to say work on your shielding, because part of it is just sensitivity to outside energy spilling on you when it shouldn't be. But given what I know of you, I doubt that you have the capacity to create and maintain effective shields on your own, at least for the foreseeable future. So instead I'd suggest looking at artificial support for shielding, if you haven't already. There are stones that work well for that, or essential oils, also symbols or art -- which last might work for you being an artist. Finding a way to reduce the outside energy slopping over you should lower your stress.

>>It's certainly complex, and therefore - I guess - interesting! But I can't wait for it to be 'remember when I had that complex problem that's not a problem anymore?' one day. :) <<

My sympathies. I hope that you get to that place. I think you have a good chance of it. Most kinds of damage will slowly repair themselves over time, especially if one is working to make that happen -- unless the healing capacity itself is wrecked beyond repair. Since you've already mentioned a variety of improvements, the latter is not the case. It may take a lot of time and work to get from "marginally functional" to "okay" but your path seems to point in that direction.

Yes, the complexity makes matters interesting. I can keep that to myself if it bugs you. But I can also tell you that one of your goals -- describing things from your perspective in hopes of helping others -- is working. As a Pagan leader, I meet a lot of folks who have been roughed up by life. The more I know about what can go wrong, and how, and what might improve it -- the better my chance of saying something useful the next time someone wails, "My life blew up in my face, what do I doooooo?" Examples at the far ends of the bell curve are especially helpful. (I know one person who survived a lightning strike.) So some of your posts do grab my attention.

I think the art posts grab me more, though. I almost always boost signal for those when I see them. I don't know if it's made you any sales yet, but several folks have said they like your art, so you should at least get a few new fans out of that.

[natf]

Thank you so much for sharing this with us. I have, at times, had similar but slightly less extreme reactions due to my PTSD. Sometimes I cannot bear to be around people. I spend a lot of time alone but it never triggers for me from the cats. I can always cuddle them. I guess what I experience it not at all the same thing but I do, at least, understand it a little.

If you want them and if this will not trigger you, have some arms-length and gentle, virtual *hugs*

[emberleo]

Thank you so much for sharing this deeply personal information. I would normally offer a person describing so much pain *hugs*, but that seems ironic here. So I offer my compassionate sympathy instead.

Touch often feels like 'sandpaper rubbing vigorously beneath my skin.' It's worse the better I know someone which makes me a delightful dating partner, close friend, family member and on and on.

Your description of the sensation itself sounds really familiar. That's exactly how I describe touch when under an attack of hypersensitivity. I don't have the contextual aspect at all, though. If I'm having an attack it's universal, and I'm also sensitive to sound, light, temperature, etc. I've been hypersensitive my whole life, so it's something about how my brain works. It is, however, directly affected by certain kinds of spiritual work, in that initiations have caused long-term increase in my everyday hypersensitivity, and certain activities can cause a spike, or even strong attacks of severe hypersensitivity.

I can't even imagine having to live with that sandpaper sensation every day! :( Attacks for me are blessedly very rare, especially now that I know how to avoid high-input environments when I start getting a warning spike. I am fortunate that my condition is generally mild and easily managed.

I bring all this up because I'm wondering if there is something chemical or neurological in common between the way your touch aversion specifically manifests in your body and the kind of hypersensitivity I have (which seems to be a relatively mild Autism Spectrum disorder, and may be the same as Sensory Integration Disorder). It seems really obvious that the cause is very different, and that what you're dealing with is more severe, more specific, and interfering much more with your life and happiness, so I don't know how much that helps to know.

But in case it's at all useful to your process of getting better, there you go.

--Ember--

[moonvoice]

I bring all this up because I'm wondering if there is something chemical or neurological in common between the way your touch aversion specifically manifests in your body and the kind of hypersensitivity I have

You know, I've never really thought about it, but I do wonder if it's possible. I have some atypical neurological traits that have never really added up to a diagnosis of anything, but might affect the way I process my PTSD in general? Thanks for bringing this up, I've never really thought of considering it from this angle.

[emberleo]

Glad to be useful!

And yeah, it very well may affect the PTSD directly.

For me, hypersensitivity swings probably look like mood swings to other people, because if I'm overwhelmed by sensory input I have waaaaay less cope for anxiety or emotional stress too, and it all tends to come out about the same way: crying. I can usually tell on the inside whether the mood is primarily biochemical (blood sugar, PMS, stress, etc.), caused by an external situation, or caused by sensory overwhelm, but only people who know me really damned well are likely to know the difference if I don't or can't tell them.

Actually, now I'm curious if they can tell? Hmm, I should ask some folks...

--Ember--

[mirrorred_star]

I really hope that one day in the future, aphehephobia will be one of the things that used to have.

[mirrorred_star]

Or at the very least get to a place where there are times/situations when touch is a pleasant thing for you?

[filhotedelua]

I passed from something not so intense but close in the first 3 years after my best friend died. Was like if the touch of other persons could hurt, and truly was painful if someone touched me. If someone insisted, I began to cry and scream, like if they are attacking me, and the sensation was of been beaten. I have long hair and is common people touch others hair to show admiration, and a lot of times I slapped peoples hands in a reaction of fear. One friend was able to touch my fingertips and don't made me run, but was all. I avoided contact with people how I could, and the few friends I don't broke contact knew they need stay away from me at least 40 cm. In school, I placed empty chairs between me and the other students and don't left the classroom during the intervals. I arrived first and left last to don't stay in the corridors full of people.
After the first 3 years, I was gifted with a cat; He was the first one I don't feel sick when touched me. I started to play with other cats, and dogs, and slowly things started to go better.
Was more 2 years to things became close to normal, but more like the way you described, was nothing pleasant been touched, just I was able to don't scream and run. In college I started theater and dance and that really helped. I told the teacher how I felt, and she slow started giving me exercises where more and more I handled with people bodies. Experimental theater and exercises of body expression, and this kind of thing. And that started to go better and I can say now I enjoy been touched. Sometimes I feel chills, or shrug, specially if someone out of my close circle touch me, but I have a normal life, not only functional, but pleasant.

But I never imagined that was a name to that. And that was something I felt guilty for feeling, very guilty, like if I was less human for that, and this is the first time I wrote about. So, thank you for writing here.

[moonvoice]

It's interesting what you've written about the theatre / dance exercises. I'm glad it really helped, too, even if it did take some time.

I find animals don't trigger it in the same way as people; it makes me very grateful for my cats!

Thank you for sharing your story here. :)